There’s a new movie “The Diving Bell and the Butterfly”. CNN says:
"Jean-Dominique Bauby was a 43-year-old editor of French fashion magazine Elle, a success and a playboy before a sudden stroke left him immobile and without speech in what's called "locked-in syndrome." Instead of allowing it to defeat him, he wrote a best-selling memoir by blinking out the letters, one by one. "He traded his body, essentially, in order to be a great artist," says Schnabel.
In Bauby's memoir, published just two days before his death at 44, Bauby calls his submerged state the "diving bell." He writes: "My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set off for Tierra del Fuego, or for King Midas' Court."
For the movie version of these "bedridden travel notes," Schnabel -- who rose to fame in the '80s as a painter -- also decided to take flight.
Many who have had a stroke or been badly ill have approached Schnabel to thank him for the movie, he says."
"Jean-Dominique Bauby was a 43-year-old editor of French fashion magazine Elle, a success and a playboy before a sudden stroke left him immobile and without speech in what's called "locked-in syndrome." Instead of allowing it to defeat him, he wrote a best-selling memoir by blinking out the letters, one by one. "He traded his body, essentially, in order to be a great artist," says Schnabel.
In Bauby's memoir, published just two days before his death at 44, Bauby calls his submerged state the "diving bell." He writes: "My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set off for Tierra del Fuego, or for King Midas' Court."
For the movie version of these "bedridden travel notes," Schnabel -- who rose to fame in the '80s as a painter -- also decided to take flight.
Many who have had a stroke or been badly ill have approached Schnabel to thank him for the movie, he says."
That’s a trick I learned when I was a kid having bronchitis 6 weeks every other year. I could lose an afternoon by inserting myself into some favored movie or book, or mentally playing on the beach. Since I like watching figure skating, I could listen to music with my eyes closed and create choreography for a couple hours. When shrinks think I’ve got to have a couple screws loose for not getting depressed with CFS, they don’t realize that I don’t live with CFS 24/7 – there’s a perfectly healthy me walking on the beach somewhere. I’m only disabled when I get up and try to do something. (It was a real blow a couple years ago when I started being disabled in my dreams, too. As long as I was still healthy while I was dreaming, life was bearable even at my worst, but when it intruded in the middle of the night, there was no escape.)
Maybe having a movie about it will help other patients learn to cope the same way.
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